The Inspiring Reason Women Are Sharing Pictures Of Their Endometriosis Scars

endometriosis scars
Georgie Wilman

For too long, the pain associated with endometriosis has been dismissed by doctors, causing those who experience this disease to feel isolated, ignored, and hopeless. In an effort to shed light on the realities of endo, women have begun posting pictures of their scars in a social media campaign called #ThisIsEndometriosis.

The campaign was born out of British artist Georgie Wileman’s photography project of the same name, and given that March is Endometriosis Awareness Month, seeks to spread understanding and education about the condition. Endometriosis occurs when the uterine tissue grows on other organs inside the body, usually in the lower abdomen or pelvis. It can result in lower abdominal pain, extreme discomfort during menstrual cycles, pain with sexual intercourse, and difficulties with fertility.

Surgeries to correct endometriosis are often expensive and rarely covered by insurance, Wileman points out in the campaign’s official statement. “Too often, these operations do nothing but cause more damage and pain,” she says. “There needs to be awareness, understanding, and education. We need to be seen, we need to be heard. Let’s name some noise.” Wileman’s campaign asks women to photograph their endometriosis scars, dating each surgery and connecting them with lines, creating a constellation.

Now, there are nearly 2,000 photos on Instagram tagged with #ThisIsEndometriosis. These brave women are not only sharing their endometriosis scars, but also their stories of shame and misdiagnosis that so commonly go hand and hand with the disease.

One user shares her constellation of scars, saying that it took “nearly a year and about 6 rounds of pointless antibiotics” to be properly diagnosed. “Here’s my ode to @georgiewileman and her fantastic campaign to raise awareness of this condition,” she writes. “Praise women’s reproductive health and all those women who live with pain and discomfort everyday.”

Another post details difficulties with fertility that often go hand in hand with endo. “Aside from the surgeries, the recoveries, & the loss of organs, endo was the main contributing factor to my secondary infertility, a loss of its own,” the user writes. “To all my #endosisters out there, RESPECT. I know how strong you are. I know your endurance is incredible. To the doctors working to advance REAL treatment for this disease, THANK YOU. I know your job is not easy.”

 

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March is National Endometriosis Awareness Month. It’s meant to help raise awareness about the 176 million women and girls with this disease (and womxn, btw this disease impacts transgender folks too). To bring attention to endo this month, I’m participating in a really vulnerable campaign, #thisisendometriosis started by @georgiewileman & sharing an unedited photo of my belly scars from three different surgeries.⁣⠀ .⁣⠀ The first set of 3 incisions was from 2010. That was my diagnosis surgery following a medical evacuation . . . about 15 yrs AFTER I began having excruciating periods. Average diagnosis delay is about 9 yrs per the North American Endometriosis Association Survey (NAEAS). My appendix was found to be hardened, infected, & scarred down onto my R ovary w/ endo adhesions, so it was removed.⁣⠀ .⁣⠀ The second set of 3 incisions was from 2014. That was a follow-up surgery, because the incorrect technique (ablation) had been used in the first surgery. My L ovary barely survived and despite using the correct technique (excision), my surgeon was not able to fully address endo on my colon.⁣⠀ .⁣⠀ The third set of 3 incisions was from 2016. That was a follow-up surgery, because by that point endo had invaded my colon wall and we were trying to prevent an emergency situation where I ended up w/ intestinal blockage + I was bleeding & in pain w/ bowel movements. I traveled to @centerforendocare in ATL & had surgery w/ a whole awesome team. I had a portion of my colon removed & resected + lost my L Fallopian tube because it was mangled from endo.⁣⠀ .⁣⠀ Aside from the surgeries, the recoveries, & the loss of organs, endo was the main contributing factor to my secondary infertility, a loss of its own. To all my #endosisters out there, RESPECT. I know how strong you are. I know your endurance is incredible. To the doctors working to advance REAL treatment for this disease, THANK YOU. I know your job is not easy. Now, let’s all #fightlikeagirl ⁣⠀ .⁣⠀ .⁣⠀ .⁣⠀ .⁣⠀ .⁣⠀ #endometriosis #endometriosisawareness #endometriosissupport #endometriosiswarrior

A post shared by Angie Alt (@angie.alt) on

Recently, more and more women have spoken out about their experiences with endometriosis, including celebrities like Julianne Hough. The dancer and actress told GLAM that when she first showed symptoms, there was no name for the disease. “Eventually I went to see a gynecologist, and I’m really lucky because he was actually the one that said that I had endometriosis, whereas most of the time it takes a woman between six and 10 years to get a proper diagnosis,” she said.

Hopefully, the campaign will continue to inspire conversations around this disease, and women will begin to receive the care they deserve.

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